Terminal illness from a doctor's perspective

The caregiver journey often ends attending a loved one through the death vigil. It isn't something that we do everyday and for most it is a life affirming or life altering experience. Rarely do we wonder how the professionals that attend to deaths everyday think about the process.

I happened to read a very perceptive piece by Dr Jeremy Topin who wrote in his personal blog, www.jtopin.wordpress.com, about a particular patient. I'll include an excerpt here but recommend reading his entire article.

Mrs. Valentine’s family waits for me in the ICU. The overnight nurse has already filled me in on the evening’s events. The family has come to a unified decision and they have called friends and loved ones from near and far. Their mom has been on the ventilator for six days and continues to get worse. Her pneumonia and kidneys are the most urgent problems, leaving her dependent on a ventilator and dialysis. But underneath the surface, her lung cancer is the real culprit. What started as a time-limited trial to see if her lung infection could get better, had now run its course. The family knows we are no longer helping her to live; we are prolonging her death. This is not what she wanted.

In my ICU, this is a “good” death. Without shocks, chest compressions or drama. Her family at her bedside throughout.

Yet we failed her.

We could have done better. We should have done better.

We failed her in medical school. We spend countless hours in anatomy lab but only a few learning communication skills and palliative care. We read books on diseases and their cures, but only a few handouts on how to comfort. Eager and enthusiastic future doctors are well prepared to treat sickness but ill equipped to face the challenges of managing death.

We failed her when too many residency programs did not actively introduce, teach, and model talking about goals of care. We teach residents how to engage patients with pointed queries on the presence or absence of signs and symptoms. But leave them unprepared to deal with the wide open responses to open ended questions about the dreams, goals and fears of patients facing their own mortality. We fail residents by not acknowledging the shame we feel when we cannot cure, and the distance that can create between us and our patients. But when we cannot cure, we can comfort. And we miss showing residents that when we feel most helpless, we can still impact our patients in powerful and meaningful ways as they move towards death

We failed her as a society by avoiding difficult conversations. End of life discussions are the exception rather than the norm. Sports and politics, along with our smart phones, dominate dinnertime, making it easy to ignore issues of our mortality. By avoiding talking about death, we fail to discover what it means to live.

We failed her as her doctors. Had she and her family been armed with more information and more choices, she might have chosen a path quite different. Maybe, just maybe, she would have opted for the comfort of her home, instead of a cold sterile ICU. She could have been in her own bed, wearing her own sweatshirt, soft and warm, enjoying waffles and ice cream, with syrup dripping down her chin. Enjoying a hug from her daughter, with her wet hair brushing against her cheek. Feeling a spring breeze from the open window on her face, as she takes her last breath.

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